Good News v My Mind

It’s been a while since I have written a blog post and lately I’ve had a real mixture of thoughts and have wanted to put fingers to keyboard but not quite managed it.  This blog post is all over the show, I warn you now.  I’ve picked it up and put it down over the last few months not really knowing how to finish it or use it.  Welcome to my mind.
The week before I was originally diagnosed with bowel cancer I spent every waking hour trying to pretend everything was OK and telling myself it wouldn’t be too serious.  It can’t be too serious. It just can’t. I don’t have the time to be seriously ill.  Then there was the other end of the scale.  I’ll be dead before I’m thirty.  I’ve spent the last eight years or so telling myself life will get better.  I will meet someone who doesn’t hurt me, but just loves me.  I’ll finish my degree.  Progress at work and have people respect me.  Eventually move back to London and carry on from where I paused everything to come home and look after someone else’s problems.  Suddenly I’m regretting not just living my life.  I’m suddenly wishing I’d taken more holidays.  I wish I’d not been such a worrier.  I wish I’d been stronger and told people where to go.  I should have just lived.  For me.
That week I organised my direct debits, my credit card bills, filed all my paperwork.  I even posted my LoveFilm DVDs which had been gathering dust for months.  I considered writing a letter containing all my passwords for things like email, Facebook, Twitter, bank accounts and my key code for my iPhone.  I also wanted to let them know about the diaries I want burned.  I never got round to that.  I couldn’t decide who should be in charge of that information, plus I wasn’t sure I wanted that information out in the open just yet.
I wanted everything in order so that if something did happen the information would be there to hand.  I then realised I don’t have a will.  Around that time there was a programme on BBC2 about writing a will – think it was something along the lines of “Who Should Write a Will” – I saw it as a sign.  I didn’t watch it though – I couldn’t bring myself to watch it.  Do many 27 year old’s have a will I wondered.  I couldn’t decide if it was only required if maybe they had a family of their own, property or business.  I then panicked about credit cards.  I asked a friend what would happen to the balance of any cards I might have.  Would my parent’s have to take it on? Or would it be deleted?  I’m still unsure. I’ve stopped using credit cards.
That week between organising paperwork and telling myself I’ll be OK. I read website after website about bowel cancer symptoms.  “Pain in the top right buttock” – suddenly the world went very quiet.  There it was.  I had that. It’s the symptom which caused me the most grief. It used to make me cry it hurt so much.  It stopped me sitting and standing comfortably.  It stopped me revising for my law exam.  it ruined my Christmas.  That night I cried.  I cried for hours.  At first it was just tears, then it became those sobs which stop you breathing properly, which make you snort.    I accepted that night that I had bowel cancer.  I had to think about the possibility it might kill me.  I went to sleep that night very calm, I have no idea how, but I did.  For the next week people would tell me I’d be OK, and that it wouldn’t be too serious.  It could’t possibly be cancer – I’m too young for any of that.  I played along with it, agreeing with them.  Knowing that at some stage I’d have to tell people.  How do you tell people you’ve got cancer?
Fast forward to now. It’s October and the weather has been lovely.  I’ve even dragged myself outside and sat in the sun reading.  I haven’t been properly outside since about May.  It all felt a bit alien.  I’m now feeling like I’ve gone backwards a bit.  That week where I kept myself busy trying not to think about my diagnosis.  Suddenly I’m at home thinking.  It’s all I do.  Something I didn’t do much of during treatment.  There was way too much going on to really allow myself thinking time.  During my treatment and operations I very rarely read and if I did it was magazines.  Never a book.  I couldn’t focus properly.  I couldn’t listen to music either. Something in my sub conscious wouldn’t let me listen to music.  The only time I’d listen to music is when I was in the car going to appointments.   I can’t let music be associated with cancer.  Eventually I want to put my iPod on, possibly going to work and I want to listen to music without being reminded about cancer.  I’ve not even watched much Sex and the City.  Before diagnosis I could easily watch it everyday.  I’ve managed to finally get back into reading.  Which has been brilliant for passing the time and letting my mind escape.  But when I’m not reading  I’m thinking. I’m thinking about everything that’s gone on.  I’m thinking about what’s next.  I’m thinking about my new body, my new frame of mind, attitude…everything.  It’s exhausting.  It makes me angry.  I snap at my parent’s.  They think I’m a horrible person to live with.  I guess it shows signs of healing.  I’m no longer so weak I couldn’t think about anything.  Now I’m improving every week.  It sort of scares me.  Because for so long it’s been about treatment and symptoms and just getting through it.  Now, I’m in limbo.  Waiting to see what happens next.  
It’s now November and looking back at what I’ve written above I realise I was incredibly anxious about my appointment with my Oncologist which was booked for the middle of October.  I hadn’t seen my Oncologist since April so it had been a while and I was nervous about what news she would have for me.  This meeting with her was to go over any further treatment that might be required and how the operation and radiotherapy had gone.
Wednesday 12 October 2011 at 17:50 I saw my Oncologist.  She couldn’t believe how different I looked.  She also couldn’t believe what a performance my treatment and operation had been.  She then very casually mentioned that when they operated there wasn’t really anything there.  I was feeling a bit dim, and wondering what she meant.  She explained cancer wise all that was in the rectum were remains from radiotherapy.  She said the radiotherapy had been extremely successful, much more than she expected.  Due to my allergic reaction to the chemo we always knew it would be unlikely I’d have it again. She said given how successful the radiotherapy was and what things were like at the time of operating she wouldn’t suggest further treatment anyway.  So I was being told I’d not need further treatment.  That was sinking in slowly.  She then said “Obviously you’ve been cancer free since the op” and that’s when it hit me.  During all the problems from the op and trips back and forth to the hospital I’d failed to think that the cancer was gone.  Here she was telling me it was gone and my last CT scan was clear.  I’m not sure how I was supposed to react.  I certainly didn’t cheer.  I just sort of sat there picking at my watch.  Then she went over what would happen next.  Blood tests and CT scans every so many months and I’d be monitored closely for the first two years.  My parent’s were thrilled.  I still sat there not really saying much. 
A week or so later I saw my Surgeon.  I wasn’t really expecting much.  Just a catch up on how my bowels are working.  Instead it sort of put a line under things.  He checked my scar and finally took the dressing off.  As far as he’s concerned they’ve healed nicely and no longer need a dressing.  Then he said he’ll see me in 6 months.  Usually I see him every month.  He told me to be sensible with my diet, and to make sure I eat well.  He said well done and then shook my hand.  For the first time I left his office smiling.  
That night I sat in my bedroom bandage free, annoyed that I’d left it a bit late to have a bath – I’d not had a bath since May! I was also thinking about meals for the week which will contain all the nutrients I need (research needed).  Then there’s the real stinker of a thought.  When I next wake up, I’m not really a patient anymore.  I’ve now got to focus on the future.  This throws up all sorts of feelings.  Some positive and some negative, but luckily I’ve found a brilliant Counsellor who is going to help me figure things out so I can try to get on with things.
I don’t think it’ll really ever sink in.  I’ll never really celebrate my latest news.  I don’t know if that’s silly but I can’t just get dressed up and have a glass of champagne and go out.  I don’t have the energy for a start…
I’ve thought about my healing process a lot lately and have been positive mostly, but occasionally the fear gets in and it rocks me to my core.
I spent a couple of weeks feeling relieved that things were finally looking good and that I might get back to work at some point.  But then there’s the other thoughts.  The headaches I get, the pain I get in my right rib cage, the pain where the tumour originally was.  My Oncologist also told me that during treatment CT scans revealed a mark on my lung, but my last CT scan showed that the mark had gone.  They’ll keep an eye on it but the Oncologist seemed relaxed about it, and said it could just be something from treatment as my body was pretty wrecked from it all.  All these things though panic me and worry me.  I’ve read blogs and articles. I know it can come back.  I’ve got people I love and care about going through their 2nd…3rd battle with it.  It happens.  That’s why I can never celebrate the “all clear”.  I hate admitting it even worries me.  I hate acknowledging this.  I don’t tell anyone about this part of the battle.  I’ll happily tell you I’m constipated, but explain how terrified I am of the future, well that’s a bit harder.
I’m aiming to go back to work very gradually in January, and in the next few weeks I’ll meet with various people from work who will help me go back to work easily and comfortably.  It’s such a massive step in going forward.  Yesterday I visited work for a couple of hours and I realised just how big a deal it is going back.  My confidence has been zapped and I’ve never felt so vulnerable.  
What worries me the most of planning and the control aspect.  Before cancer I loved being in control and I’ll admit when I first got ill my biggest issue was not being in control and having to accept this thing inside me was doing what it wanted INSIDE ME.  If I make the plan to go back to work and take back some control am I just asking for trouble?
Then I read everything I’ve written and I get angry. I get angry that I can allow myself to think so negatively.  I’ve been given good news.  Get on with it.  Live woman.  But I’ve had cancer threaten me and my life, and that will live with me.  That’s the problem.  I think negatively, then positively, then negatively then positively until I’m exhausted and no longer know why I’m crying.  My Oncologist was right.  This bit will be the tough.  My support team of Dr’s and Specialists has suddenly disappeared and I’m left wondering what on earth has just happened and what do I do next without buggering it all up.
I’m going to shut up now.  I’ve rambled on for too long.  I’m sorry it’s negative when it should be positive.  i promise the next post will be positive.  I’m going to make sure it is.
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One thought on “Good News v My Mind

  1. From my own experience of returning to work (without a clear ct but marks on liver) this could well be the hardest part of everything related to your illness and treatment. Don't bottle things up, expect people to say unintentionally hurtful, exasperating things. Get help, talk to someone if you feel yourself sinking. I refuse to accept the words all-clear. Nobody can ever confirm it. There is no such thing. Americans say NED – no evidence of disease which is entirely accurate. But by the same token nobody can tell you you will not fall in the path of a train, bus, speeding car. That you won't have a piano drop on your head, or any more likely ways to die. Expect to think every ache and pain is cancer, then remember how BC you just ignored them and they went away. There is no crystal ball. Don't push yourself too hard, only do things that don't make you angry or unhappy. And remember you have people around you who love you.

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